My Dad's Story

[Dad'sMyHero]

I wanted to share my Dad's story with MDS in hopes of helping others and also seeing if his story is similar to any one out there. This is also very helpful considering our family lost our Dad a little more than a month ago to complications related to MDS. We thought we had more time with him, but I guess you never know with Myelosysplasia, especially how infections and bleeding can be so pervasive.

In 2005 Dad had a second bypass surgery during which he had to have 4 units of blood. In the recovery period post-bypass he began have intermittent episodes of shortness of breath and some fatigue. This was troublesome because it was totally unlike his recovery from his first bypass in 1989.

Over the next four years, he went from cardiologist to pulmonologist to gastroenterologist seeking some explanation and in all cases there was no problem with any of those systems. Yet the shortness of breath continue to the point that in the summer of 2008 he consulted a hematologist/oncologist. At that time his hemoglobin was just slightly under normal but they began following him. Over the next year his hemoglobin started to lower into the 11-12 range and he was given Aranesp shots. The doctor suspected MDS and in July 2009 he had a bone marrow aspiration that revealed the had low-risk MDS (refractory anemia with ringed sideroblasts). His blast percentage (blasts being baby blood cells) was under 5%.

We moved another part of the state that summer and he began procrit shots in late August and had his first transfusion of packed red cells sometime in the fall. In late fall he began treatment with Vidaza (which unfortunately was not helpful) over the recommended six weeks. It caused severe neutropenia (lowering of this specific white cell type) and the Vidaza was discontinued. All along he had been transfusion dependent. having 2 units every 2-4 weeks.

After a rest period from the Vidaza, in the spring of 2010 the doctor started him on a daily dose (10 mg) of Revlimid. Side effects were severe, and the dosage was lowered to 5 mg daily. Although he did not have 5Q deletion MDS, the Revlimid began to take hold and transfusions became further apart. I think the doctor started him on 5 mg of Revlimid every other day at that point. He had a transfusion in October of 2010, and then no more until Christmas 2010. He became transfusion-independent until late fall of 2011.

It seemed that everything started to decline around Thanksgiving. His platelets had been up and down throughout the Revlimid treatment, in the 40-60 range pretty consistently, but they began to drop to the 20-30 range. He was hospitalized with what was finally diagnosed as a severe infection presenting as pleurisy and causing extreme pain. While in the hospital a bone marrow aspiration was taken and it was determined that his MDS had escalated to Refractory Anemia with Excess Blasts. His blasts were estimated to be 9-12% at that time. He was hospitalized for 12 days and went home with Home Heath assistance.

He was never able to get back to where he was health-wise in the early fall, and after being home from December 21-January 12, he was again hospitalized, this time with severe pain in his head. Because his platelets had gotten so low (<20) he had developed subdural hematomas. Surgical intervention was not an option due to the low platelets. Attempts to give him platelets failed and his reserves were so depleted, he succumbed to the disease on January 15th surrounded by family and friends.

It is important to note that he had been a 40 year survivor of Stage IIIB Hodgkins Disease (treated at NIH in 1970 in a clinical trial (MOPP)) that became standard treatment for Hodgkins for many years.

Experts in the field now believe that his MDS was a secondary cancer, but we were blessed that he had a 40 year remission. NIH has been notified of his death and are actually amazed that he had such a long remission, especially considering the advanced stage of his Hodgkins Disease. They are going to be in further conversation with us for research purposes.

I am sure I share a lot of the frustration that many of you feel about this disease. I feel like we did everything we could for my Dad, but with certain types of MDS, I guess only so much can be done. I do take solace in the fact that my father no longer has to deal with such painful shortness of breakness, bouts of tiredness and weakness, and is no longer in pain and is no experiencing the ultimate Peace. Let me know if I can help anyone in any way possible. Thanks for listening.

Sincerely,
Joe

[Shelly L. Vanslette]

I can't say much more because I am learning how to deal with my MDS, I am so afraid of the unknown. My God is my only salvation this day and time. However it's still very hard.......I do appreciate you taking the time to write about your Father,,,,,,,,I am sure he was/is very proud of you...........Thanks again Shelly

[Darice]

Hi Joe,
Thank you for sharing your story, and I am very sorry for your loss.
My husband is the one with MDS and I am his caregiver. He is a non-Hodgkins Lymphoma survivor: diagnosed 2001 (stage IV, at 60), autologous stem cell transplant in 2008 so the MDS is, as in your father's case, secondary and harder to treat. His is Refractory Cytopenia with Multilineage Dysplasia, ring sideroblasts, and is positive for 7q deletion/monosomy 7. He did not tolerate the Vidaza, was only able to have 3 injections, and is now getting along with a Neulasta injection every two weeks. He is not transfusion dependent . . . yet. We know this won't last forever, so we are enjoying the good days. He is almost a year since the diagnosis. Sometimes just being able to "talk" about it with people who understand is a relief and a blessing . . . so few have ever heard of MDS.
Thanks for sharing, and for listening

[Dad'sMyHero]

Thank you Shelly and Darice for your kind words.

I wish you both the best with your individual situations. Message me if you need to chat. I know how difficult MDS can be, but there can be hope.